Tuesday, April 18, 2017

I've had a few references in past posts about time management, how some our days E can't do homework, and that our weekends are packed. Here's why.

Every year (for the past...7 years or so) the engineering department at JMU develops a human powered vehicle (HPV) for one individual. The entire class (one year, second year maybe?) divides into groups (of ~8 people) and create a prototype HPV for one end user. Depending on the year's class, there are 6+ prototypes. At the end of the project, the end user is provided a custom made HPV selected from the prototype models.

Contingent on the end user's agreement is participation in Overcoming Barriers (OCB), a program developed by JMU Kinesiology professor Dr. Tom Moran to provide athletic conditioning for underserved youth (typically youth with various disabilities). Each participant is paired with a JMU student mentor and there are several classes to choose from; the HPV end user has to pick two of these to demonstrate a commitment to physical fitness.

I met Tom several years ago while he was getting his doctorate at UVA; he has been considering Elena as a possible HPV end user for some time, but wanted her to be bigger, stronger, and ready to commit. We were asked if we would like to participate at the end of summer 2016; we agreed.

This agreement means we have committed to driving an hour (each way) to JMU to participate in adapted sports programs, as well as visiting the engineering department separately (as needed) since September. In general we selected one weeknight (usually Mondays, as Elena receives her homework for the week on that day and can select which assignments she can do in the car during the drive) and one weekend (Saturdays mornings). Vivian, while typically developing, also takes part in Monday activities (and has her own mentor) since we leave for JMU right after E gets picked up from school. The kids chose Tennis on Mondays, and Aquatics on Saturdays. As you can imagine, this puts a lot of pressure on E to get her schoolwork done on time. E's educators know our commitment and were willing to work with our constraints. The kids enjoy the classes (E has made some serious improvement with tennis using one crutch--including a bounce serve!) and the environment is constantly encouraging and inclusive. Aquatics guarantees E will be ready for summer swim team, which she wants to continue (hopefully with a legal breaststroke sometime this season!). We were given one point-of-contact-person to field questions, work to coordinate between the Kinesiology and Engineering department, and serve as E's mentor. Thank you Julia!

Elena currently has her Triton X-100 pink recumbent bike and a 16" two-wheeler with training wheels. Last September, her ability to use these HPVs was limited to a completely flat surface, she needed help getting in/on the bike, and her feet had to be strapped in so they would stay on the pedals. The recumbent bike had a huge turning radius and if she got stuck, a grown up would have to back her up b/c her feet were strapped in. She also has tipped it twice b/c she had a slow reaction time and needed more strength to use the hand brake. With the two-wheeler (with training wheels), she worked on turning (through doorways) and used coaster and hand brakes. E's main PT took the training wheels off last fall, trying to teach Elena that she needed to put her foot on the floor to prevent falling--some progress was made. Elena is way too tall for that two-wheeler now; any larger, readily available bike is too high for her to step over, too large for her to manage, and too large for any typical training wheel. We started to use the recumbent again, this time with her feet not strapped to the pedals, but they occasionally fall off (E still isn't sure how to "push" her feet against the pedals all the time to keep constant contact). She typically drives the pedal with her heel/end of foot, and due to the femoral/tibial anteversion of her bones, in order for her knees not to knock she angles her toes outward, heels inward on the pedals. Frequently her heels end up on the crank arm of the pedals and it annoys her.

In the beginning of the Bike Project, E would go to her class and I would answer questions from the engineering students press-room style and they would take notes. After OCB class E would do the same. The students got to know what Elena likes, what she wanted in a bike, what I wanted in a bike, what we had that didn't work, and what would ensure her safety. Here's what I can remember of our original wish list:

Elena's perfect bike:
independent operation
able to go up hills
able to go fast and stop fast
look attractive (like a two wheeler)
colored pink and green
have a basket and water bottle

My perfect bike:
independent operation, including mounting and dismounting
lightweight
not look like a baby tricycle or "tank" (huge adaptive bike)
able to fit on a standard bike rack (ideal), but fitting in the back of the van is acceptable as long as the family can go biking using one vehicle (E, Viv bikes in back of car, while adult bikes on external hitch rack)
"teachable"--meaning E could use this to graduate to a two-wheeled bike
have gears so she can go up (reasonable-sized) hills; our neighborhood hills are probably too steep but it would be GREAT if she could ride to a friend's house

So the engineering students set to work.

This whole process is fascinating.

I went to the prototype presentations last week; 12 groups presented their alpha models.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.